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📅 Day 4 of #shadesofpku for #IPKUDAY2025 We urge every country to align with PKU care guidelines! 🌍 📣 “Gov’t should ensure reimbursement of special low protein foods & Phe-free/low Phe protein substitutes for all PKU patients.” – Rec. 54 #PKUEuropeanGuidelines #pkuunmetneed

The PKU Association from the Czech Republic has been fighting for the reimbursement of low-protein food for over a decade. Click the link below and read the statement issued on the occasion of #IPKUDAY2025. These are #shadesofpku and #unmetmedicalnneds linkedin.com/posts/espku_sh…

⌛There are just 2 weeks left to nominate a candidate for Sheila Jones Award. Last year Kate Learoyd and Caroline Graham received it for their efforts and advocacy to reimburse Sapropterin in the UK. ✍️ Nominate your candidate for this unique award: 🔗 espku.org/sheila-jones-a…

📢 On #shadesofpku, we're highlighting the urgent need for good PHE monitoring. #IPKUDAY2025 European Guidelines: freq. of blood PHE tests (weekly for infants/pregnancy, monthly for adults), lab results back within 2 working days. Yet delays persist! It must change!

📅 Less than 2 weeks to #InternationalPKUDay! 🌍 Use the official hashtag #IPKUDAY2025 & logo in your posts! 🎨 Download the logo: pku.at/ijd0jw We want to see your support – patients, doctors, orgs & pharma pros! 💪

On this day of #shadesofpku campaign leading to #IPKUDAY2025 we shine a light on unequal access to pharmaceutical treatments options. This is frustrating for patients.

Today during #shadesofpku organised on the occasion of #IPKUDAY2025 we highlight the need for new doctors to choose #PKU as their career path. It offers research possibilities, opportunity to shape standards of care and being a leader in a care for patients with a rare disease.

📢 7 days left to nominate a candidate for Sheila Jones Award. Don't wonder if the person or organisation you have in mind is a good candidate - just nominate them: espku.org/sheila-jones-a…

🚨 Registration is NOW OPEN for the European Society for Phenylketonuria and Allied Disorders Treated as Phenylketonuria (E.S.PKU) Conference 2025! 🚨 👉 Click here to register: espku.org/conferences/e-… See you in Hamburg! 🇩🇪 #ESPKUConference2025 #ESPKU2025 #PKU

#IPKUDAY2025 #shadesofpku highlights crucial PKU healthcare transition. EU Guidelines Rec. 25 demands specialized adult care. This #pkuunmetmedicalneed means planned, patient-collaborative transitions are key to avoid lost follow-up. We urge adherence for patient quality of life.

Today during our #shadesofpku campaign for #IPKUDAY2025 we highlight the inequality in access to various methods of therapy for adults with PKU. 🧐 We emphasize that adults should have access to all methods of therapy including the newest pharmaceutical options. 💊

Two Days Left! Nominate a candidate for the Sheila Jones Award! 🏆 🗝️ This is a fantastic opportunity to honor an unpaid individual, group, or patient organization that has made a significant difference. Go to: ➡️ espku.org/sheila-jones-a…

We're amplifying the call for more research on adults with PKU! Their experiences and health status need to be better understood As part of our #shadesofpku campaign for #IPKUDAY2025, we're raising #adultpkuawareness. Let's push for studies that truly reflect adult life with PKU.

📢 Calling adults with PKU! As part of #shadesofpku campaign organised for #IPKUDAY2025 we encourage you to fill this survey 🗣️📝 and raise #adultpkuawareness docs.google.com/forms/d/e/1FAI…

Happy International PKU Day! 🌍Add #IPKUDAY2025 and show us how you are celebrating. 🥳 Read ESPKU statement about how patients and families drive our advocacy actions: espku.org/2025/06/28/sha…

Thank you to patients, families, organizations 🤝, professionals 👩‍⚕️👨‍⚕️, and companies 💊 and their employees for making #IPKUDAY2025 special! Your engagement showed the shades of PKU. Together, we're raising awareness and making a difference! 💪

Today, for #shadesofpku & #IPKUDAY2025, we celebrate the immense power of the PKU Community! 💪 It's where patients & families find unwavering support & understanding. We unite to raise PKU awareness. It`s one of the lightest shades of PKU.

Our #shadesofpku campaign is wrapping up! We've highlighted #unmetmedicalneed in PKU, from food access to adult care. Your engagement on #shadesofpku made a huge impact. Thank you for raising your voices! #IPKUDAY2025

📢 We kindly inform you that, as for right now, registration for #ESPKUConference2025 is closed. We have already reached our capacity limit. We are evaluating options if we can release additional tickets.

Ready for your summer adventures? ✈️ ☀️ Don't forget your E.S.PKU Metabolic Passport! 🌍 This vital document explains your PKU needs. Get yours via your national PKU association! Used it? Share your experience with E.S.PKU: [email protected]